This Is Autism

Last Monday, Autism Speaks told the world that autism is:

 . . . living in despair

 . . . fear of the future

 . . .exhausted, broken parents

. . . lost, helpless, burdensome children

. . .  a national emergency



To read the full Autism Speaks "Call For Action," click here.

Autism Speaks does not speak for Philip, me, or many other autistic people and their families (as evidenced in the comments section of the article).  We refuse to accept a definition of autism that plays on fear for gain, paints a one-sided negative view of autism, and ultimately dismisses our children as less than human.

In response to Suzanne Wright's "Call For Action" letter, a flash blog is set for Monday, Nov. 18 to take back the phrase "this is autism."  To submit or read contributions visit http://thisisautismflashblog.blogspot.ca/

Here is Philip's contribution (the parentheses indicate where I asked Philip to clarify his thought on the previous word):

THIS IS AUTISM 

Autism is a neat way of seeing the world.

I am autistic and I like it.

I am smart.

I argue with some people that say autism is a disease.

It is my life.

A lot of stims are feats (sensory needs) and raw emotion.

I am light to kids in prison to escape.

Talking (with letterboard) lightens a dark place.

I am autistic.

I am autistic.

I matter to God.

I am alone with my God to talk to Him.

He tells me that I am your servant,

He says "I am always with you."

Save me from silence.

He answers me.

I am autistic.

Philip, age 10, non-verbal

 At his friend Max's birthday party at Leaps and Bounce- Nov. 2013

I Love You

I had to write today.  November 16, 2013 will always be remembered because it is the first time Philip spelled the three most important words to me, “I LOVE YOU.”  

Love.  It is the motivation for the highest priorities in life- the reason we marry and start a family.  We want to love someone and have that love reciprocated.  

I love Philip and all my kids to pieces.  I know Philip has always loved me too.  I could see it in the twinkle in his eyes when he smiles at me.  I could feel it in the way he leans into me and smells my hair.  A few times I have even heard Philip speak the words “I love you” with his voice echoing back after I tell him “I love you.”  All of these expressions make my heart melt.  But this “I LOVE YOU” was extra special.  I was not expecting it.

This year my eyes have been opened to a profound truth:  not all is what it seems on the outside.  Just a short year ago, I viewed Philip as being the developmental age of a toddler.  He had hardly any speech.  His educational goals were that of a preschooler such as matching numerals to the number of objects and identifying action words.  He was not fully toilet trained.  It never occurred to me that inside Philip was intellectually and emotionally intact.  He was absorbing everything he saw and heard.  Because I didn’t accord Philip with the same intellect and feelings that a “normal” person would have, I am sad to say, I didn’t always treat him with the same decency I would have had I known he understood.  I allowed him to see the full brunt of my frustration toward him.  I yelled.  I cried.  I spoke about him to others in front of him.  I treated him like someone much younger than his age.

I now know autism cannot be cured.  I think we waste a lot of time, effort, money, and tears pursuing a cure that is not to be had- but that is a topic for another post.  Instead, I strive to heal my son, not from autism, but from whatever keeps him from being whole.  The things that keep him and others like him from being whole are many.  Not having a voice is number one.  When Philip was younger, I placed so much stock on Philip’s physical voice, but because it could not fully develop, his communication became a guessing game to all of us.  The things we called “behaviors” such as tantrums and meltdowns were probably both communication and frustration at not being able to communicate clearly.  RPM has changed that.  Philip now has a wide open and reliable way to tell us anything.  It is the biggest miracle!  Another thing that keeps Philip from being whole is not being able to fully participate in society.  We are helping Philip begin to do this by integrating him and supporting him in his communication during Sunday school and Stockade (scouts), a kids’ fitness class with regular peers, playdates, and just doing more things as a family.  In the future we hope Philip could be fully included in regular classes at school and further down the road find a meaningful job.  The way I now see it, the sky’s the limit!

This evening I was moved to begin healing Philip from my mistakes as a parent.  For Philip’s bedtime, I continued to read through Exodus.  We are at the part with the plagues.  It is neat seeing how God used the Moses/Aaron tandem to carry out his plan.  God spoke to Moses, but Aaron was Moses’ voice to Pharoah because Moses was “slow of tongue”.  I also read some more of the book The Reason I Jump.  There was a part where the author, then 13 year old Naoki Higashida who is also non-verbal, mentioned how he knew he made people’s lives difficult and it made him sad.  As I read it, I felt flustered, not wanting Philip to feel this way.  After reading, as our custom, I asked Philip something he was thankful for.  “LIA TALKING TO ME,” he spelled.  He had a great evening with Lia as she talked to him using the stencils.  At just 8 years old, Lia has amazing patience and a desire to do things with her brother.  Philip is starting to spell with Lia one word responses.  Then I asked Philip one thing he wanted prayer for.  Philip proceeded to spell, “ARE YOU DEPRESSED FROM KIDS?”

“Oh Philip.  I am not depressed,” I answered, “In fact, I’ve never been happier.  I am so glad we can talk and I can get to know how smart and thoughtful you are.  You are teaching me so much every day.  I have never learned so much.”  Then I knew it was time to apologize.  “Philip, I need to tell you something.  I want to apologize for how I treated you before we saw Soma.  I didn’t know how smart you were and that you understood everything.  I know it is not a good excuse.  I am sorry I made you feel like a baby and said things that hurt you.  I am so sorry.  Will you forgive me?”

“Y, (for yes)” Philip pointed.  “Do you have anything else you want to say to me,” I asked.

“I LOVE YOU.”

We held each other and I said “I love you” back.  We said our prayers as my voice shook and I felt God healing us both.           

 December 2011

  

Typhoon Haiyan

With the devastating news of Typhoon Haiyan causing widespread death and destruction in the Philippines, I thought it would be good to discuss it with Philip.  I am of Filipino ancestry and still have relatives, including my grandmother, living there.  Fortunately they live north of where the typhoon hit and were not immediately affected.  Still, it was hard to see the images of destruction and despair coming from a place close to my heart.

Philip and I read some news articles about what happened and discussed ways we could help.  "Donate money," he spelled.  We proceeded to go to the computer and make a donation towards the relief efforts in that area through Food For the Hungry, an organization we have been intimately involved in for a few years.  We also learned about hurricanes (which are called typhoons in the Indian and Pacific Oceans) in a Brain Pop lesson.  Philip recalled experiencing hurricanes when we were living in Miami.  "We developed a plan to evacuate," he recalled.  "We boarded them (the windows) up."

Then Philip decided to write a story about the typhoon.

Typhoon

I am living in the Philippines during the typhoon.  No one in my family survived but me.  A hole replaces a house.  An entrance remains.  There is no food or water to drink.  At such a time I need people to help us.  I am stranded.  I am going into madness.  I am not stopping, not giving away hope, until it gets better.  The End.

Boarding up for our first hurricane, Frances, in 2004

Typhoon's destruction

   

To the Veterans

Philip's letter:

Dear Veteran,

Thank you for serving our country.  I am a soldier too.  I am fighting for autistics to communicate.  I know the sacrifice you make for us.  I am so peaceful because you openly fight for our freedom.

                                             From,
                                             Philip

This is for all the veterans, and especially for Mrs. Debbie Eliason who works with Philip at church and Mr. Al and Mrs. Barbara Robertson, who all are good friends of our family and who have encouraged Philip throughout the years.  God bless you!

Ana

Last Friday was a bittersweet moment as I watched my daughter Ana compete in her last high school gymnastics sectional meet.  It is so hard to believe she is a senior in high school and the days of watching her compete vault, floor, beam, and her favorite, the bars, will soon come to an end.  Gymnastics has been a major part of our lives for so long.  The first time Ana did gymnastics was when she was 4 years old and enrolled in a community education class at Williamsville North High School.  I still remember that day so vividly.  It was around Halloween and one of the coaches wore a Scooby Do costume.  Ana wore pig tails and a purple leotard.  When they had their program, she was clearly more agile and strong than the other girls.  You could tell already she would be a natural.  At the end of class, the coach told me I should enroll Ana at a regular gym because they saw her potential as well.  During the summer before Kindergarten, I checked out a few gyms with Ana to see where we would enroll her.  I saw nice things about each of the gyms, but when Ana saw a group of high level gymnasts working out at Stumpfs, she was sold.  “I want to come here,” she announced.

Ana has always known what she wanted and worked hard to get it.  During her Kindergarten year, she began at Stumpfs as a beginner and after one month was moved up to advanced beginner and then the highest level for her age, pre-comp, with Coach Eric Stumpf.  I enjoyed watching Ana’s practices.  Already she was going 3 times a week and learning back handsprings and a flyaway, or single back tuck dismount from the bars.  Coach Eric seemed to really like Ana and even gave her a practice balance beam.  By the time Ana was in second grade, she started competing at meets as a level  5 gymnast.

Ana’s passion for gymnastics grew in Miami.  She was one of the stars at her first gym in Miami, Flairs.  At her first competition, the Orange Bowl in Ft. Lauderdale, Ana swept first place.  She would continue to place in the top 3 all year.  Ana would go to practice 5 days a week.  She loved it there and would be upset if she had to miss a day.  I loved watching Ana compete.  She was always so graceful and confident under pressure.  She never appeared to be nervous and always looked like she was enjoying herself.  She prided herself on learning new skills and I would share in her excitement of achieving them.  

When Ana was in 6^th grade, Flairs was bought out so we moved to another gym called Universal.  Universal is the home of Olympic medalist Dannell Leyva.  Ana was coached by Dannell’s mom Maria.  There was a more serious atmosphere there.  While Ana was learning more difficult skills, she also started an injury that would eventually change the trajectory of her gymnastics aspirations.  

While at a meet in Tampa, Ana was warming up her back handspring when she felt a pop in her elbow.  She was unable to move it after that.  After several doctor’s visits and MRIs, it was determined that Ana had osteochodritis dissecans, a wearing away and separation of cartilage and bone in her elbow due to the constant pounding and weight-bearing on that joint.  Ana had several bone fragments floating in the joint space which needed to be removed.  Much of the literature suggested that the condition could not be cured and discouraged continuing in the sport.  Ana was heartbroken and it was hard on me to see her so upset.  We took Ana to one of the best orthopedic sports physicians in town.  He treated the Miami Dolphins.  Unlike the previous doctor, this one said Ana could resume gymnastics after surgery and 6 months of physical therapy.  During surgery, the doctor removed 3 fragments from her elbow the size of kernels of corn.  He also poked holes in her cartilage to stimulate new bone growth.

When we moved back to Buffalo, Ana started back at Stumpfs after having been out for 6 months.  I remember her first day back.  All the girls saw her and shouted her name and came running up to her to give her a big hug.  It was a great homecoming for Ana.  Stumpfs would prove to be her second family- not just because of the time spent there, but because her coaches and teammates really loved one another and took care of each other.  Ana began her high school gymnastics career as an 8^th grader competing for Williamsville South under coach Kurt Stumpf.  From 9^th to 12^th grade she would compete for East. 

One thing I admire so much about Ana is her determined spirit.  Many kids would have given up, but my daughter always pulled through.  Her elbow was not the only thing she overcame.  She overcame a broken ankle, a tooth knocked out, and all sorts of aches and pains.  Besides that, the mothers of the other gymnasts always talked to me about how they love my daughter because she is so kind and helpful to their daughters.  “She is such a good role model,” they’d say.  

This past Friday’s sectional meet was like a celebration of Ana’s gymnastics career and a send-off to a new beginning.  Ana competed a solid meet, scoring over 9 on all events.  Her last event was her favorite, the bars.  A lot of people knew it was her last time competing locally and the cheer, “Go Ana” could be heard from all around the gym.  Ana’s routine was electrifying the way she twirled and swung around the bar swiftly with ease and punctuated the routine with a high double back dismount.  The crowd cheered wildly with appreciation and Ana showed raw emotion on her face.

The sectional meet has always been a special meet for the way they honor the gymnasts not just by their scores, but as teammates and leaders.  The first presentation was for the winners of the Colleen Fatta Memorial Scholarship, in honor of a gymnastics coach who died young from cancer.  Ana was chosen as one of the two recipients.  As the woman read portions of Ana’s essay about her plans for college, I was overcome with emotion.  Ana wrote about how Philip had affected her life.  Her new goal was to study neuroscience and engineering to understand autism and develop technology to help people communicate better.  She equated success not by the number of medals on her wall, but by the number of ways she could make a positive difference in people’s lives.  That’s my girl.  I was so proud at that moment.

As the night continued, Ana won the Spirit award and the Tink Award for leadership.  At last it was time for the medals.  Ana came in 6^th place on vault and floor, 5^th in beam,  2^nd in bars, and 3^rd in All-Around.  She would represent Section 6 in the state meet for the fifth time.  

There have been times I have lamented the short life span of gymnastics and its toughness on the body.  But if you ask Ana if she would change anything, her answer is a resounding “no.”  I believe Ana has learned a lot of life lessons through the sport and has had her character tested and refined through it.  I truly believe the hard work, determination, teamwork, and perseverance she developed through gymnastics will carry through in college, her future aspirations, and her family.     

 Ana at Presidential Meet in Ft. Lauderdale 2005

  Competing for Williamsville East Flames

 Representing the Western Region for the Empire State Games 2010

Supporting her sister Lia

Taking 3rd Place All Around at Section 6 Meet Nov. 1, 2013

 Ana- the sky's the limit for you!

Underground Railroad and Progress Videos

This week Philip has been studying the events leading to the Civil War.  We have done lessons on slavery, abolitionism, Frederick Douglass, Missouri Compromise, The Compromise of 1850, and Harriet Tubman and the Underground Railroad.  We are following the Complete Book of United States History, Grades 3-5, by McGraw Hill Children's Publishing.

I ask Philip a lot of factual questions about the material, but what is really interesting is now being able to ask Philip's opinion on various matters.  Two days ago, I asked him what he thought of slavery.  His answer:  IT IS WRONG.  IT CARRIED TO EXTREMES A LOT OF (human) NATURE TO ALLOW MISTREATMENT OF PEOPLE.

I have not been much of a video maker, but I have gotten many comments, suggestions, and encouragement to take some videos of me working with Philip.  I was even more motivated after I dug up a video I made last May (click here) which I had forgotten about.  Watching it back and seeing the progress we have made is a great feeling.  I won't make videos a lot, but I'll try to do them once a month or so.

Click here to see Philip answering some questions after a lesson on the Underground Railroad.  

Afterwards, Philip created a story based on the picture below of a slave family being hidden in a snow fort by children of abolitionists pretending to play.  In the distance are two men on horseback searching for the family to capture and return to the slaveholders.  Click here to see him spell his story on the letterboard and transpose it onto a computer by typing. 

  

I am a slave. I am running away. A escape seems to be impossible.  A little child is helping me satisfy my desire for freedom.  She is covering me with snow.  I want to play but I cannot risk being seen so I manage to ask Harriet Tubman how to escape from the south.  She smooths the way to the north.  I am frantic to leave.  I am a slave soon to be free.     

*  A special Thank You to my daughter Lia, age 8, for always being my enthusiastic helper, my videographer, and Philip's greatest cheerleader.